Xeloda med concerns and timing

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Kiter
Posts: 17
Joined: Tue Oct 06, 2020 7:59 pm

Xeloda med concerns and timing

Postby Kiter » Sun Oct 03, 2021 7:37 pm

Hi all,

TLDR;
Question 1: how critical is food with Xeloda and how much food is really needed?
Question 2: What's with the "don't exercise after taking" instructions... and is 30 min enough time after taking to address this?

Long Version;
It's been 6 months since I was last here. Ended my 12th round of FolFox in April with my CEA down to 8. But it's time to restart Chemo as my CEA is climbing back again -- now in the 600's. This time the regiment will be an Avastin IV (in office) followed by 1500mg of Xeloda taken every 12 hours (at home) for 14 days. Then 7 days to recover. Repeat.

My question is about the Xeloda. Trying to figure out how to follow the "eat 30 min before taking" rule and the "don't exercise after taking" rule has me scratching my head. I'm supposed to take this in "exactly" 12 hour intervals. Now, I don't eat breakfast -- have not in over 40 years. I play pickleball most days between 9 and noon; eat lunch between noon and 1pm and dinner between 6 and 7pm. So I guess that means:
    8:00am -- get up and eat "something?" (so much for sleeping in -- EVER!)
    ... kill 30 min "waiting"
    8:30am -- take Xeloda
    ... 30 min drive to pickleball courts,
    9:00-noon -- pickleball,
    ... 30 min drive home
    12:30pm -- lunch & supplements
    7:00pm -- dinner & supplements
    8:00pm -- eat "something?"
    ... kill 30 min "waiting" (easier to do here than in the morning)
    8:30pm -- take Xeloda
    Midnight -- sleep

I'm very structured with what and when I eat (I do not snack). Keto/Carnivore diet (less than 20g of Total Carbs per day). I'm concerned that putting food on my stomach 4 hours before it's used to it is going to cause issues. On those rare occasions I have something to eat in the morning, my stomach is not happy with me (long before I got the Cancer) and I'm lethargic (not good for playing pickleball). Right now, the only plan would be to drink a Keto Shake, but is that enough food for the Xeloda interaction?

Thx in advance for your thoughts on this.
Diagnosed Aug 2020, age 56, male
Aug 2020 Sigmoid Colon Stage IV; Met liver & lungs
9/3,8/2020 CEA 1389; 1166
Started FolFox (with Avastin) 10/5/20 w/CEA at 1721
Stopped Oxaliplatin after round 9 due to Neuropathy
Ended 12th round 4/6/21 with CEA at 8 and CT Scan showing 85-90% reduction in tumors
Monitored through (current) Oct 2021 CEA now in 600's
Later this (Oct '21) month, starting Avastin IV (in office) followed by Xeloda tablets taken daily for 14 days out of 21

Rock_Robster
Posts: 591
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: Xeloda med concerns and timing

Postby Rock_Robster » Sun Oct 03, 2021 8:23 pm

I understand there’s 2 reasons behind this:

1. drug dosage and absorption rates are significantly affected by proximity to food, and this was the basis that Xeloda was tested on (meaning changing this could potentially result in a lower or higher effective dose, or a different concentration profile over time), and
2. You are much more likely to experience nausea taking Xeloda on an empty stomach.

On #1, perhaps a good one to discuss with your pharmacist. For #2 this was definitely true for me - I was running late one morning and took it after only a cookie, and I did NOT feel well. Very nearly threw it up again. My oncologist’s suggest for food prior was “at least 500 calories”, so that basically makes it a small meal. But no doubt that’s not a hard rule, so do with it what you will!

I’ve never heard the no-exercise thing before though. What’s the source for this one?

Good luck,
Rob
39M Australia
2018 Dx RC, 12cm high
Mod diff, EMVI+ LVI+. 4 liver mets
pT3N1aM1a Stage IVa. MSS NRAS G13R
CEA: Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0, Mar-20=2.2, May-20=1.9, Jun-20=2.1, Sep-20: 2.1, Dec-20: 2.3, Mar-21=2.5, Jul-21=3.1
11/18 FOLFOX x6
3/19 Liver resection
5/19 25x pelvic radiation; complete met. response
07/19 ULAR w ileo, 1/27 LN+
08/19 Found liver spot
08/19 FOLFOX x1, FOLFOXIRI x1, FOLFIRI x5
12/19 Liver resection
02/20 Ileo reversed
03/20 NED (CT/PET/MRI/scope) - latest scans Jul-21

Kiter
Posts: 17
Joined: Tue Oct 06, 2020 7:59 pm

Re: Xeloda med concerns and timing

Postby Kiter » Sun Oct 03, 2021 9:01 pm

I’ve never heard the no-exercise thing before though. What’s the source for this one?

The pharmacist. She said to give it 30 mins before exercising. Since I have a 30 min drive, that seems to work out.
Diagnosed Aug 2020, age 56, male
Aug 2020 Sigmoid Colon Stage IV; Met liver & lungs
9/3,8/2020 CEA 1389; 1166
Started FolFox (with Avastin) 10/5/20 w/CEA at 1721
Stopped Oxaliplatin after round 9 due to Neuropathy
Ended 12th round 4/6/21 with CEA at 8 and CT Scan showing 85-90% reduction in tumors
Monitored through (current) Oct 2021 CEA now in 600's
Later this (Oct '21) month, starting Avastin IV (in office) followed by Xeloda tablets taken daily for 14 days out of 21

Rock_Robster
Posts: 591
Joined: Thu Oct 25, 2018 5:27 am
Location: Brisbane, Australia

Re: Xeloda med concerns and timing

Postby Rock_Robster » Sun Oct 03, 2021 9:03 pm

Kiter wrote:
I’ve never heard the no-exercise thing before though. What’s the source for this one?

The pharmacist. She said to give it 30 mins before exercising. Since I have a 30 min drive, that seems to work out.

Ok interesting thanks; I hadn’t come across this one.
39M Australia
2018 Dx RC, 12cm high
Mod diff, EMVI+ LVI+. 4 liver mets
pT3N1aM1a Stage IVa. MSS NRAS G13R
CEA: Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0, Mar-20=2.2, May-20=1.9, Jun-20=2.1, Sep-20: 2.1, Dec-20: 2.3, Mar-21=2.5, Jul-21=3.1
11/18 FOLFOX x6
3/19 Liver resection
5/19 25x pelvic radiation; complete met. response
07/19 ULAR w ileo, 1/27 LN+
08/19 Found liver spot
08/19 FOLFOX x1, FOLFOXIRI x1, FOLFIRI x5
12/19 Liver resection
02/20 Ileo reversed
03/20 NED (CT/PET/MRI/scope) - latest scans Jul-21

Kiter
Posts: 17
Joined: Tue Oct 06, 2020 7:59 pm

Re: Xeloda med concerns and timing

Postby Kiter » Sun Oct 03, 2021 9:06 pm

Kiter wrote:Question 1: how critical is food with Xeloda and how much food is really needed?
Question 2: What's with the "don't exercise after taking" instructions... and is 30 min enough time after taking to address this?

Additional Question 3: Has anyone seen an increase in their Nueropathy with Xeloda? It's listed as an 'uncommon' side-effect, but since I already have it...???
Diagnosed Aug 2020, age 56, male
Aug 2020 Sigmoid Colon Stage IV; Met liver & lungs
9/3,8/2020 CEA 1389; 1166
Started FolFox (with Avastin) 10/5/20 w/CEA at 1721
Stopped Oxaliplatin after round 9 due to Neuropathy
Ended 12th round 4/6/21 with CEA at 8 and CT Scan showing 85-90% reduction in tumors
Monitored through (current) Oct 2021 CEA now in 600's
Later this (Oct '21) month, starting Avastin IV (in office) followed by Xeloda tablets taken daily for 14 days out of 21

rp1954
Posts: 1583
Joined: Mon Jun 13, 2011 1:13 am

Folic acid

Postby rp1954 » Mon Oct 04, 2021 2:05 am

Remove folic acid from your diet and have natural folate sources. Folic acid and 5FU compounds are toxic to varying degrees in different people, 50% of the population seriously affected. This has been discussed several times before. This is probably a big part of the Xeloda dose difference between Europe and the US.

There are multivitamins with folinic acid, natural folates or L5MTHF (synthetic version of natural folate) instead of the most common folic acid. The brands can change folate sources quietly so you have to monitor it.

I was surprised to find out that those highly advertised commercial cereals had **wildly** varying amounts of folic acid. Some brands you could get up to 1.6 mg (1600 mcg) in a big bowl. An amount enough to toxify my wife over several weeks while on chemo and threaten chemo continuation.

By removing all folic acid and eating natural folates (liver), she was able to increase her chemo dosage over 50% with less side effects. At least one CSN forum guy used the European Xeloda dose for his cancer cell burnout after weeding out folic acid.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper to almost nothing mid 2018, mostly IV C

rp1954
Posts: 1583
Joined: Mon Jun 13, 2011 1:13 am

Chronomodulation

Postby rp1954 » Mon Oct 04, 2021 2:19 am

Chronomodulation of Xeloda is new and unknown to most drs and oncologists.

What I've seen suggests its potential usefulness. UFT prescribing doctors had a lot more experience with a simple version. We had no problems with a chronomodulated UFT version of ADAPT monitored for liver stress, plus lots of carefully added/watched other stuff.

This Xeloda paper starts the modern Xeloda chronomodulation dosing conversation for its AM/PM technique.
Phase I pharmacological study of continuous chronomodulated capecitabine treatment
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper to almost nothing mid 2018, mostly IV C

rp1954
Posts: 1583
Joined: Mon Jun 13, 2011 1:13 am

IVC and HFS

Postby rp1954 » Mon Oct 04, 2021 5:29 am

Although there was not much literature on it, patients have been using IV vitamin C to make their chemo tolerable for a long time. I've known mCRC patients at the point of quitting Folfiri that gained 2-3 years chemo by IV vitamin C. I have to note tolerance is different than improved chemo performance (or impairment) and that is where the lack of data is, particularly oxi- data.

For fundamental reasons, IVC and 5FU appear well matched for KRAS mutant cells and for the disruption of notorious HIF-1a induced sugar metabolism. **For my mCC wife**, IV vitamin C appeared to combat several markers in combination with other oral megavitamin cocktails and ADAPT. I don't mean "Myer's Cocktail" with B vitamins, I mean straight IV vitamin C, 1 to 1.5 gram C per kg body mass, in formulations described by the Riordan Clinic.

One of the important gains of IV vitamin C seems to be against Xeloda's Hand Foot Syndrome, a common limiting side effect of Xeloda. Basically (some?) patients find they can totally suppress HFS symptoms by IV vitamin C 50 grams (up to 1.5 g C/kg) twice a week and that HFS returns over ca two weeks if they miss several drips.
watchful, active researcher and caregiver for stage IVb/c CC. surgeries 4/10 sigmoid etc & 5/11 para-aortic LN cluster; 8 yrs immuno-Chemo for mCRC; now no chemo
most of 2010 Life Extension recommendations and possibilities + more, some (much) higher, peaking ~2011-12, taper to almost nothing mid 2018, mostly IV C

User avatar
beach sunrise
Posts: 539
Joined: Thu Mar 05, 2020 7:14 pm

Re: Xeloda med concerns and timing

Postby beach sunrise » Mon Oct 04, 2021 9:16 am

Never heard of "no exercising" for 30 minutes. I will have to read the paper that comes with rx. Interesting the pharmacist would say that. Learn something new every day.
I take xeloda every day (no days off) with small meal/snack or a shake. I try to take it around 7 am, way before breakfast, then again about midnight. So, not with big meals.
And yes to rp's advice about folic acid. Watch out for it.
HFS is a big deal with chemo. I have never had it thank goodness. I credit it to vitC, oral and IV.
I've been on ADAPT+++ for 1 1/2yrs with no side effects at all. Liver panels always in low good range.
I wish you a good outcome with your maintenance chemo.
8/19 RC CEA 82.6 T3N0M0
Neoadj 5FU/rad 6 wk
High dose IVC 1 1/2 wks before surgery. Continue still twice a week
Surg 1/20 APR - margins T4bN1a IIIC G2 MSI- 1/20 LN+ LVI+ PNI-
pre cea 24/post 5.9
FOLFOX
7 rds 6-10 CEA 11.4 No more
7/20 CEA 11.1, 8.8
8/20 CEA 7.8
9/20 CEA 8.8, 9, 8.6
10/20 CEA 8.1
11/20 CEA 8's
12/20 CEA 8's & 9's
ADAPT+++ TM drug
MHL1+
PMS2+
MSH2+
MSH6+
POLD1 , KRAS Q61H
Chem-sens test NCI "Test failed, neo adj CR worked. Not enough ca cells to test"

Deb-o
Posts: 5
Joined: Mon Sep 13, 2021 7:55 pm

Re: Xeloda med concerns and timing

Postby Deb-o » Mon Oct 04, 2021 4:52 pm

I took Xeloda along with radiation for 29 days, to help shrink a tumor before surgery. After surgery Folfox for 9 sessions. If I understood my oncologist correctly, the food must be 30 minutes afterwards due to absorption. I’m not a breakfast person, but did follow his instructions. It also helps with nausea. I was very nauseous while taking Xeloda.
While taking Folfox, I was not nauseated at all, probably due to the iv given to prevent it. I was required to eat before my chemo was given. First question before each session was what have you eaten today? The nurses had baskets of different foods available, so if you hadn’t eaten before arriving you where required to eat. No neuropathy during Xeloda. Didn’t develop neuropathy until my 8th session of Folfox. But the cold sensitivity was after my first session, but went away after chemo ended.
Now 11 months after my last chemo session, I still have neuropathy in my feet and hands.

Brearmstrong
Posts: 111
Joined: Sun Mar 26, 2017 3:24 pm
Location: CT

Re: Xeloda med concerns and timing

Postby Brearmstrong » Mon Oct 04, 2021 6:39 pm

I was on Xeloda for two years and echo everyone’s responses. I had to be very careful to eliminate all folic acid as hfs was brutal and dosage still had to be lowered as I couldn’t even walk (I was a long distance runner prior). If you live in Europe, much easier but the US puts folic acid in way too much of our food. I never waited 30 minutes to take the pills. The further away from a full stomach, more likely for me to vomit. I also never heard anything or read anything about no exercising for 30 minutes. My neuropathy didn’t get worse but since being off chemo for over a year, it’s definitely got better and I’ve had it since folfox back in 2017. It’s improved to almost 90% resolved which may give you some hope! Best of luck that it beats back that CEA.

Brenda
48 F Jan 17 2 sons
tumor appendix/colon
Muc Adeno 4cm
mod diff G2 T4aN2
nodes 8/50
CEA 4.6 after surgery <.05
KRAS G12D MSS
FOLFOX Apr-sep 17
Clean CT Jul 2017, oct 17, CEA 3.4, 8.1. May 18 2.3,1.0,1.3, 1.3, 1.0, 2.3, 2.2, 2.1,2.2,1.6,1.4,1.5,2.8,2.2,2.5
Oct 17 NED
Nov 17 PET para aortic nodes Stage IV
Folfori w/avastin Dec 17
May 18- surgery on nodes xeloda 2years
Aug 18-CT NED Clear CT's Nov 18-May 20
July 20 hysterectomy CEA 1.7 chemo break
July 21 vats right lung
Clinical trial?

Rikimaroo
Posts: 362
Joined: Tue Dec 20, 2016 8:48 pm
Location: Florida

Re: Xeloda med concerns and timing

Postby Rikimaroo » Mon Oct 04, 2021 7:24 pm

I was on Xeloda Maintenance with Avastin. I didn't hear anything about exercising. I chose to opt out of taken Xeloda going forward and do the 5fU pump which is Xeloda instead. AT 600 CEA I am surprise your Onc is putting you on that regimen which is really maintenance. My Onc would be putting me right back on FOLFIRI to knock it back down especially given that there might be CT/Pet Evidence of Cancer. Xeloda pills never worked for me and part of it was the decision to take it was on me, not my doctor so I would skip sometimes because I hate the pills in my mouth and its way more toxic then 5FU.
RC T3N1M0 12/16
MSS - NRAS Mutation
Chemo Rad, CCR - W&W 5/2017
Recurrence 11/2017
CT Scan 11/2017 Liver Met 5.5cm Stable, Stage IV
LAR/Liver Resect 4/2018
Reversal 10/18
CEA highest 500, lowest .8 throughout process, waiting for latest
Recurrence left vesical/pelvic sidewall - 10/7/2019 resect perm bag,
CEA rise Feb/May 3.7, 8.8, 30, Recurrence in Pelvic
CEA 40 right now, but was 57, so folfiri to beat it back down.
Lots of chemo for the past 4 years.

Kiter
Posts: 17
Joined: Tue Oct 06, 2020 7:59 pm

Re: Xeloda med concerns and timing

Postby Kiter » Tue Oct 05, 2021 12:06 am

Thanks RP, I will be reviewing all my supplements for Folic Acid sources. My diet is mostly meat and cheese (Keto/Carnivore) from grass fed happy (till the end) cows so any Folic Acid from there would at least be all natural.

Chronomodulation is an interesting topic, I've sent a message to my oncologist asking for his thoughts on this. Might fit with my lifestyle better for me and the other mentioned benefits as well.

I already do additional Vitamin C, but not in IV form. I'll tee this up with the oncologist too as well as my naturopath doc. She (the naturopath) is looking into supplements to support my system with the new chemo drugs in mind. I am concerned about HFS as I'm finally seeing improvement in the neuropathy and don't want to backslide on my mobility abilities any.

Thanks Beach, it's good to know that only a snack or shake works for you. I'd rather not increase my food/calories too much as I'm happy with my current weight.

Thanks Brearmstrong, I was wondering about that "waiting 30 minutes after food before taking" thing. If I can shorten the time between eating and taking the Xeloda that's just so much the better for me. It makes even more sense if all I'm eating is a shake that's easy (and quick) to digest.

Thanks Rikimaroo, I had my CT Scan today and the tech kinda screwed up by actually commenting on it to me a bit. Surprisingly she said I only had a cyst on my liver and not a cancer tumor... hummmmmm. But, until I hear that from the official reviewing doctor I'm going to assume she was wrong and there is still a tumor there. I was told from day 1 (14 months ago) that my treatments will always be palliative and not corrective. I believe the goal with this is to find something we can do indefinitely that retains a better quality of life than the full FOLFOX regiment I did before. But knowing there is a 5fU pump option is good if the pill taking becomes a problem for me too.
Diagnosed Aug 2020, age 56, male
Aug 2020 Sigmoid Colon Stage IV; Met liver & lungs
9/3,8/2020 CEA 1389; 1166
Started FolFox (with Avastin) 10/5/20 w/CEA at 1721
Stopped Oxaliplatin after round 9 due to Neuropathy
Ended 12th round 4/6/21 with CEA at 8 and CT Scan showing 85-90% reduction in tumors
Monitored through (current) Oct 2021 CEA now in 600's
Later this (Oct '21) month, starting Avastin IV (in office) followed by Xeloda tablets taken daily for 14 days out of 21

User avatar
horizon
Posts: 1638
Joined: Tue Apr 12, 2011 10:10 pm

Re: Xeloda med concerns and timing

Postby horizon » Thu Oct 07, 2021 9:03 am

I never heard that exercise advice. I always work out at night. I took the Xeloda immediately after dinner and always wait at least an hour before working out after that so the timing just happened to work for me.
I'm just a dude who still can't believe he had a resection and went through chemo (currently 10 years NED). Is this real life?

Kiter
Posts: 17
Joined: Tue Oct 06, 2020 7:59 pm

Re: Xeloda med concerns and timing

Postby Kiter » Thu Oct 07, 2021 5:41 pm

horizon wrote:I took the Xeloda immediately after dinner

Are you taking it every 12 hours? I.e. does this mean your morning dosage is really early in the morning?
Diagnosed Aug 2020, age 56, male
Aug 2020 Sigmoid Colon Stage IV; Met liver & lungs
9/3,8/2020 CEA 1389; 1166
Started FolFox (with Avastin) 10/5/20 w/CEA at 1721
Stopped Oxaliplatin after round 9 due to Neuropathy
Ended 12th round 4/6/21 with CEA at 8 and CT Scan showing 85-90% reduction in tumors
Monitored through (current) Oct 2021 CEA now in 600's
Later this (Oct '21) month, starting Avastin IV (in office) followed by Xeloda tablets taken daily for 14 days out of 21


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